Thursday, December 6, 2012

The Mom I Would Have Been

Yesterday I met a friend for coffee.We each had our babies in tow (both little
guys, 6 months old and 10 weeks old) and our big girls were at school.Both of our older children have special
needs, and the conversation ebbed and flowed from special needs school stress
to sleep schedules for new babies.As our
visit ended, she mentioned getting a group together of moms with little ones,
since it can be isolating to be at home with a baby.

Something in me clenched.I hesitated to say yes, without knowing why.And then it clicked: here I am, starting
again.This time with a different child,
one unencumbered by differences and appointments . . . with him I am just a
typical mom.An average mom of an
average baby with universal “problems” (nap schedules, pacifier addictions).A mom who can watch other babies crawl around
and pick up toys and think oh I can’t
wait for that instead of oh . . .
should that be happening already? I guess we’re late on that one, too.The mom that I would have been, if things
with Maya hadn’t been so different.

And it made me realize that parents of children with special
needs suffer a double loss.The first,
the one most often discussed, is the loss of the-child-that-you-imagined . . .
the loss of future dreams that might not happen (college? who knows), the loss of skills that you thought would be a
given (stairs? maybe someday), the
loss of health that people take for granted (I would list specialists here, but I don’t have space for another paragraph).

But the second loss, you don’t hear as much about.It’s more personal than the loss of the child
you thought that you’d have . . . it’s the loss of the parent that you thought
you would be. Where the-loss-of-the-child-you-would-have-had says I wish that my child could play catch with
me,the-loss-of-the-parent-you-would-have-been
says I wish that I could play catch with
my child.

While I’ve shed a lot of tears over the past four years, I’m
not sure that I ever realized that some were for Maya and some were for me. But now that it’s come to mind, I’m going to
sit with it long enough to mourn the mom that I would have been.

I would have been a mom who took her baby to music class and
clapped and played happily, without the little clench in my stomach as I
wondered if the other moms and nannies were wondering why my baby couldn’t sit
unassisted or clap or crawl like the other babies could.

I would have taken pictures of my baby’s comically messy
attempts at self-feeding, and scolded her for throwing food on the floor . . . instead of giving bottles for years, doing countless oral motor exercises, and
battling to get food in and swallowed, sometimes through mutual tears.

I would have had time for more playground trips, or coffee
dates with other moms & little ones . . . instead of being trapped at home by
our tight schedule of feeding-therapy-nap-feeding-therapy-nap-feeding-bed.

I would have set my girl loose at the playground gate and sat down to enjoy a moment to myself,
watching her run and climb but giving her some space to be independent . . . instead
of guiding her safely to the equipment, positioning her feet and hands and
prompting her to step-and-pull-step-and-pull.

I would have watched her run up to other kids and start
playing, and wondered what they were talking about . . . instead of holding my
breath when she approaches age-appropriate peers, wondering if they will shun
her, if she will notice, and how I should react.

I would have yelled after her to be careful as she took off running
with friends . . . instead of watching her giggle as children run past her so quickly
that she doesn’t have a chance in hell of keeping up (and so I laugh with
her and say wow! They’re fast! and
pretend that watching them and laughing is just as much fun as running around).

I would have reminded her to use kind words while playing . . . instead of standing behind her and translating her noises and gestures for other
kids.

I would have met and chatted with other moms, making small
talk about the kids and preschool and playdates . . . instead of shying away because
I didn’t want to talk about our life of doctors and therapies with them, I didn’t
want pity, and I didn’t want to make them uncomfortable.

I would have taken her on more fun outings . . . instead of taking
her to so many specialists.

I would have gone to birthday parties and socialized with
other parents . . . instead of dreading the moment when I walk into the room full of
same-aged children and think oh my god,
that’s what 2 years old is supposed to be like?

I would have played with her and thought about playing, or
maybe let my mind wander to other things (errands or what’s on tv tonight) . . . instead
of thinking about therapy goals and how to position the toys and then move her
legs just so, even though it-hurts-a-little-but-it’s-just-for-a-minute-I-promise.

I would have walked her to her to preschool in the
neighborhood, meeting local moms and chatting outside . . . instead of loading
my tiny, nonverbal three year old onto a bus to ride to a special needs
preschool downtown, then walking up to my apartment and worrying about the long
ride, and hoping that the matron would be nice and take care of her if she was
tired or sad.

I would walk with my girl, or sit in a coffee shop with her,
or take her shopping, and pay attention to her and talk with her and never give
a single thought to if people were looking at her, or wondering about us, or
staring.

I would talk with her, and enjoy the often humorous
observations of a toddler/preschooler . . . instead of spending (literally)
countless hours researching, developing and teaching a variety of communication
systems, each time hoping that she would be able to learn how to say more
things and that I could get a glimpse of what she thinks about.

Parenting would have been a much easier job . . . but, then again, I wouldn’t have appreciated
it.

I would have lamented over seasonal colds and illnesses, saying
things like we just can’t catch a break! when
we were hit with a few in a row . . . instead of knowing that we were kind of
catching a break the whole time by not having any larger issues to deal with.

I would have celebrated milestone moments with enthusiasm
and pride, but lost the magic of those milestones quickly . . . instead of marveling
at the unbelievable motor feats involved with something like sitting up
unassisted, or jumping. (Seriously---jumping----did
you ever think about how crazy it is?Somehow
you just will yourself up into the air and your legs make it happen.
Unbelievable.)

I would have complained about the hard work of
progress---potty training woes, a willfull child who dresses themselves in
mismatched or seasonally inappropriate clothing, a kid who jumps off furniture
or climbs onto countertops . . . instead of recognizing the feats of strength and
coordination and development that underly each one of those things.

I wish that I could have been that other mom with Maya.We would have had a ton of fun, I think, the
Maya-that-she-would-have-been and the mom-that-I-would-have-been.But I
certainly love the Maya-that-she-is . . . and without her, I wouldn’t have
become the kind of mom that she needed, a mom better than the mom that I would
have been.

Thank you AGAIN for your words, words that I just have not taken the time to write down. I cried and smiled through this post. My second little one is also special needs - not as major as my first but different nonetheless. (Down Syndrome vs Rett Syndrome) Looks like that "typical mom" experience was not meant to be for me. It is hard to not wonder "what if" but you are right.....without the disabilities I would have never become the mom I am. Thank you.

I found your blog through Kelly Butler....this post is written as if you'd crawled into my head. Most days, I get by OK. And most days I advocate for my child, raise awareness for Rett Syndrome, and celebrate all that she CAN do. But sometimes, I am just sad. Sad I will never yell at my daughter to get off the damn phone with her friends, to stop using my make-up without permission, or do her homework already. Sometimes, I just need to admit that.

Thank you for putting into words exactly what I have thought many times. I would have been an awesome mom to a typical little girl.... I still think I am an awesome mom for my little Rett princess but its definitely a different kind of awesome- one that I never imagined I could be!

Perfect! I had a typical mom experience, then I had the special needs mom experience, then I had another typical mom experience. Looking back I pick my battles with my youngest now where as with my oldest everything had to be perfect. My youngest is the miss matched kiddo in seasonally inappropriate clothing and I think "what amazing skills, she dressed herself!" rather than "there's no WAY you're leaving the house like that"! I'm a better mom now, a better person, all because of my special needs sweetie. Thanks for this post!

This is the first time I've read your blog and I REALLY needed it. I just canceled an account with a women that bragged about how wonderfully "calm" she has "trained" her children to be..a remark she volunteered while explaining that she "expects a calm dog" (we place companions and therapy dogs). Besides the fact that this remark was only the start of several others it is the one that really got me. I've been pretty depressed lately about the mom I-thought-I-was-going-to-be, but people like this client remind me that I could not go back to being the mom-that-has-no-clue! Looking forward to this being the first blog I follow!

All true. Being the parent of a disabled child is very isolating - your lives are totally different, your kid doesn't really mix well with their peers and its often a depressing comparison.

Of course, its also a tremendous growth experience as I would imagine any parenting adventure is. Its just that with a disabled child you are practically overwhelmed with opportunities for personal growth.

My daughter has autism and she has expanded my horizons far beyond my comfort zone time and again. Although I must say I would happily accept some stagnation and self-centeredness for awhile. Enough with this personal growth!

Thank you for writing this. Like the others, I feel you've peeked inside my head and written how I feel. My Devin is the most amazing person I know and I feel he has taught me so much about love, patience, and determination.

Well written. As a mom of a daughter with autism, I can relate....my older daugther had delays and hardships from the very beginning. So far my younger daughter doesn't, so I too am experiencing the "this is the mom I could have been". I smiled and cried while reading this and relating.

Wow, Dana. Those were words I need to hear today. My "typical" kid is older rather than younger than my special needs kiddo (moderate CP). I know there have been times when I have parented my older kiddo "differently" because I was the same parent parenting my special needs kiddo. My oldest is now 18 and at college. She recently told me we were/are good parents despite her little sister's issues. I think the loss of the sibling the brother or sister could have had is an important thing to think about, too. Thanks again for your post. Beautifully and honestly written (as always). You were a blessing to me today!

Please, everyone, I do know it is not the same. But I have three , developmentally normal, beautiful, crazy boys. And I always wanted a girl. I am sad for the mom-daughter relationship I will never have. But need to mourn that so I can focus on the fantastic blessings that I have. Thanks for the reminder - I think we forget to spend the time to mourn what we thought we might be or wanted to be, to fully be who we are.

What a gorgeous post. The sentence "oh my god, that’s what 2 years old is supposed to be like?" really hit home with me. I think that all the time. My son is three now and for some reason, seeing kids his age surprises me all the time. It did when he was 12 months, 18 months, two, etc. Seeing my son's typical peers guts me, every time. Thanks for sharing this.

an insightful post. and i agree with your ultimate conclusion: we are better moms now.

i know i would have been that perfectionist mom, the one pushing her kids to learn mandarin at 3. instead, at 3, i was trying to get my son to string together even two words, in English. this has forced me to learn to become more sensitive to what my son can do, and not push him into an overachieving mold of my own making. hopefully it makes me a better parent to my neurotypical daughter, too.

I am not the mom of a special needs child. But I thank you, so very much, for this beautifully written post. For giving me and so many others a small but eloquent glimpse into what being a special needs mom means. Your writing cultivates in me a deeper empathy, compassion and respect for special needs parents like my brother and sister in law. Thank you for putting your feelings and thoughts into such honest and compelling words.

This is just beautiful and something I think about a lot. My oldest is my one with special needs, and my only boy, and there is a lot of father/son things that really get me right where I live. I am a different mom because of my son, and I don't know if I'm a better mom because of him but I am a perfect mom for him, no matter what. We were all made for each other, I figure.

I love, love, love your post. As the mother of a beautiful, and beautifully delayed, special needs little girl, this hits home. This one is right up there w/ "Welcome to Holland" for me. Thank you for writing this.

This was a beautiful, honest and heartfelt post.My first born was diagnosed with Asperger's/Autism when he was in kindergarten. All of those things I felt, each and every one. During junior high, I stopped comparing his experiences to mine, his father's his sister's or anyone else's. I became determined to make my goal about making him as happy and fulfilled as anyone else - the same thing every parent wants for their children, abled or disabled. I always tell parents not to look too far down the road, and take it day to day. The forks in the road can be challenging but they can also be exciting and deeply satisfying. My son has lived a very different life than that of his sister's. His experiences, challenges, and successes are very different and sometimes, exactly the same. He is the kindest, happiest most thoughtful person I know who has taught us so much about the journey of life.

Said perfectly!! I always remember the other Moms talking about how bored they were at home with their small children. I wished that I could stay home and "play" rather than going to the doctors and therapists. My beautiful 6 year old daughter is paralyzed with Spina Bifida. She is now in first grade and in school full time. She is really noticing the differences between herself and the other kids. I knew the day would come, and last week she said to me for the first time that she didn't want Spina Bifida and she wanted to walk and run like the other kids. It breaks my heart. But, in looking at the big picture, we are happy every day that she is alive and she brings us such joy!!

That was wonderfully said.. My feelings put into words!! My first child has cerebral palsy level 5.. and he has given me more patience that I thought I had in me. I am now blessed with a beautiful healthy baby girl, so I get to experience both worlds.. the typical and the untypical.

Thank you for saying what I have been unable to put into words. I am so thankful for you and other moms you sharing their lives online for the world to read. At times like this it helps this journey to feel a little less lonely, knowing you (and others) are walking this road too. God Bless!

Like so many other moms, I can relate to everything in this post. My second child is the one with the disability, so I already knew what I was missing and grieving. My husband too - all those daddy and daughter activities. Thank you for putting into words what is in our hearts.

You hit home with this one. I have two kids who grew up pretty healthy though my oldest has mild Cerebral Palsy. And when I had my youngest I expected an easy time, being "older and wiser" and had all these plans. But with all the challenges I've had to let go of a lot of plans and change my expectations and it is a loss in a way. Your family is beautiful!

Thank you for such a beautiful post. I was crying throughout. I may not have a special needs child, and I cannot say that I totally understand how you feel, but I want you to know that my heart is with you and it is not pity.

Reading this in an auditorium, about to teach kids, and trying not to cry too openly. I am deeply moved. I am not a Dad, but teaching kids every day, challenging and frustrating at times. But nothing like what you went through on a daily basis, without giving up. This is just beautiful. Thank you.

This is my first time reading your blog. I picked the perfect post for me to read right now. Literally had me balling me eyes out. I'm a single mother to my 3 year old son, who also has severe developmental delay. It's been the hardest three years of my life, but I wouldn't have it any other way. He's done nothing but change my life for the better, and really had me open my eyes to a completely different life. Not many know what it's like for the mothers of children with special needs, and the daily struggles we all face. THANK YOU for your words, even though I broke down by the end, it made me feel better knowing I'm not alone.

We are delighted to let you know that this post has been nominated in the ‘Best International' post category of the SWAN UK Blog Post Awards (aka The ‘SWANS’)

Be sure to pop over to the SWAN UK website to grab some badges for these categories to encourage your other readers to also vote for you – make sure you let them know which specific posts have been nominated!

If you tweet the SWAN UK twitter account using the #SWANS hashtag with the URL of your blog posts and the category you have been nominated for we will retweet it for you and hopefully get you some new readers.

And the uncomfortable feeling you get when you get the subtle look from others when you announce that your having another child... after the last one was disabled... the how-could-you-risk-having-another-one look, and or feeling... that starts with stoney silence from others... I've gotten that one, and straight forward anger...

Nicely said. As the mom of a 23 year old functioning at a 4 year old level, I have been there. The best way to weather the loss of what might have been for me is to celebrate those things I haven't had to fight. Cell phones, inappropriate clothing, boyfriends, mean girls,although, there are days when I would trade it all.

I am a special needs mom. However my special needs child passed away 2 years ago March 4th. He had a grand mal seizure in the middle of the night. He passing was completely not expected. I will never forget the mom he made me. Patient, empathtic, enlightened to the less significant things. He was 3 when he died. I have an older son too. I got to be the mom with with normal milestones, the mom that rejoiced when my younger son finally accepted a table food during feeding therapy, that would bring tears to my eyes. And, now I am the mom that is full of wondering. Who would he have been grown up. What would he have been capable of. At the same time, he did what he was meant to do here. He changed my life. He gave me direction. He was my guiding angel on earth and now is my guiding angel in Heaven. How blessed we are to get to be moms. No matter what kind of mom we are, and the challeges of motherhood we are given. God bless you and your beautiful babies.

What a brilliant post, that obviously resonates with many, many people. It's a deserved finalist in the SWAN blog post awards. I thought you would want to know that the winners will be announced on 13th April at 2pm as part of our Undiagnosed Children's Awareness Day. Keep an eye on the SWAN UK blog or twitter where I will announce using @SWAN_UK and @RenataBplus3 ... GOOD LUCK!

p.s. you can get a finalist badge from the SWAN website on the finalists' page x

I hope you don't mind but I shared your bost on my Facebook Blog PageAnne Hawkes Blog Page. Someone commented "my heart goes out to that lady... such a heartfelt piece of writing." I loved this blog too it was very moving. A well deserved winner of the SWAN Blog Awards

Wow! This was amazingly insightful. Having just left a school eval. meeting for my daughter (that was a year in the making) and hearing "there is no evidence of a learning disability because she is responding to intervention," I am having so many mixed emotions of my own. Yay for no "learning disability" but why does she struggle so very much? I will keep being the best mom for her that I can possibly be.

Thank you for putting all my jumbled thoughts into cohesive sentences and helping me to mourn the ‘mom I thought I would be’ today. I am so amazed at how similar our thoughts and experiences are. I could have written every one of those words. I also have a 4 –year old daughter with undiagnosed oral and motor planning challenges. She also struggles with balance, coordination, feeding and verbal communication. And so I struggle with all of the same issues that you have described in this and a few other ‘deep thoughts’ posts I have read this morning. I’m so grateful to have found your blog today – thank you for sharing!

I have e Maya too, but younger, she is six and has Autism. What you wrote is exactly what I feel and it is a mirror of my life, amazing how unique each child with Autism is, yet how similar we are;) Thank you for sharing:)

I relate very much to this post...my daughter is very similar..in the fact that she has an undx genetic condition..she also has the same thing going on with her hearing..you are the only other person ive heard of whos kid has the same hearing issue..